Saturday, September 21, 2019
We invite you to join the Usher Syndrome Coalition in celebration of our 5th annual global Usher Syndrome Awareness Day!
In 2015, the Usher Syndrome Coalition declared the third Saturday in September as our global “Usher Syndrome Awareness Day.” It was even entered into the United States Congressional Record!
This day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome and why we "Own the Equinox" each year at this time.
In support of the Coalition's community-building efforts, here are a few ways you can get involved:
- Become an USH VISIONARY: Sign up to make a monthly donation and accelerate research by connecting the global Usher syndrome community.
- Ask your state, town or region to recognize Usher Syndrome Awareness Day (Check out this guideline for requesting a state proclamation from your governor.)
- Make a one-time tax-deductible donation to the Coalition to celebrate and acknowledge Usher Syndrome Awareness Day.
- Create a Facebook fundraiser to benefit the Usher Syndrome Coalition in honor of Usher Syndrome Awareness Day.
Take a look at some events that took place in 2018 in recognition of Usher Syndrome Awareness Day:
September 4: USH Awareness Day Proclamation Presentation | Middletown, New Jersey
September 4: USH Awareness Day Proclamation Presentation | Scotch Plains, New Jersey
September 5: USH Awareness Day Proclamation Presentation | Wayne County, Pennsylvania
September 6: USH Awareness Day Proclamation Presentation | Northampton, Massachusetts
September 13: USH Awareness Day Proclamation Presentation, Monmouth County | Freehold, New Jersey
September 14: Strike out USH Tampa Bay Rays Game | Tampa, Florida
September 14: UsherKids Australia Conference | Victoria, Australia
September 14: Usher Syndrome Society Shine a Light Portrait Exhibit | Victoria, Australia
September 15: Usher Syndrome Awareness Day Walk | Brazil
September 15: Usher Syndrome Awareness Day Rally | Lagos, Nigeria
September 20: Comedy Night to benefit the Coalition | Giggles Comedy Club, Saugus, Massachusetts
September 22: Camryn's Race for Usher Syndrome | Roanoke, Virginia
September 22: Usher Syndrome Awareness at the Austrian Congress for Rare Diseases | Vienna, Austria
September 30: Motomo Nation "Eat, Play, Give" BBQ Fundraiser for the Coalition | Long Island, NY
Are you planning any other events around Usher Syndrome Awareness Day? Let us know and we'll help spread the word!
Thanks to your support and dedication to introducing the world to Usher syndrome, the Coalition is able to continue our work to help and connect all in our community. We look forward to celebrating this day with you.